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Fertiprotekt, Oncofertility Consortium and the Danish Fertility FertiPROTEKT, Oncofertility Consortium and the Danish Fertility-Preservation Networks What Can We Learn From Their Experiences? von Wolff, Michael; Andersen, Claus Yding; Woodruff, Teresa K; Nawroth, Frank Published in: Clinical Medicine Insights: Reproductive Health DOI: 10.1177/1179558119845865 Publication date: 2019 Document version Publisher's PDF, also known as Version of record Document license: CC BY Citation for published version (APA): von Wolff, M., Andersen, C. Y., Woodruff, T. K., & Nawroth, F. (2019). FertiPROTEKT, Oncofertility Consortium and the Danish Fertility-Preservation Networks: What Can We Learn From Their Experiences? Clinical Medicine Insights: Reproductive Health, 13, 1-17. https://doi.org/10.1177/1179558119845865 Download date: 29. sep.. 2021 REH0010.1177/1179558119845865Clinical Medicine Insights: Case ReportsWolff et al 845865review-article2019 Clinical Medicine Insights: Reproductive Health FertiPROTEKT, Oncofertility Consortium and the Volume 13: 1–17 © The Author(s) 2019 Danish Fertility-Preservation Networks – What Can Article reuse guidelines: sagepub.com/journals-permissions We Learn From Their Experiences? DOI:https://doi.org/10.1177/1179558119845865 10.1177/1179558119845865 Michael von Wolff1 , Claus Yding Andersen2, Teresa K Woodruff3 and Frank Nawroth4 1University Women’s Hospital, Division of Gynaecological Endocrinology and Reproductive Medicine, Inselspital, University Hospital, Bern, Switzerland. 2Laboratory of Reproductive Biology, Faculty of Health Science, The Juliane Marie Centre for Women, Children and Reproduction, University Hospital of Copenhagen, University of Copenhagen, Copenhagen, Denmark. 3Department of Obstetrics and Gynecology, Northwestern University, Chicago, IL, USA. 4Centre for Infertility, Prenatal Medicine, Endocrinology and Osteology, Amedes group, Hamburg, Germany. ABSTRACT: Fertility preservation is an increasingly important discipline. It requires close coordination between reproductive medicine specialists, reproductive biologists, and oncologists in various disciplines. In addition, it represents a particular health policy challenge, since fertility-protection measures are to be understood as a treatment for side effects of gonadotoxic treatments and would therefore normally have to be reimbursed by health insurance companies. Therefore, it is inevitable that fertility-preservation activities should organise themselves into a network structure both as a medical-logistic network and as a professional medical society. The necessary network structures can differ significantly at regional, national, and international level, as the size of the regions to be integrated and the local cultural and geographical conditions, as well as the political conditions are very different. To address these issues, the current review aims to point out the basic importance and the chances but also the difficulties of fertility-protection networks and give practical guidance for the development of such network structures. We will not only discuss network structures theoretically but also present them based on three established, different sized networks, such as the Danish Network (www.rigshospitalet.dk), representing a centralised network in a small country; the German-Austrian-Swiss network FertiPROTEKT® (www.fertiprotekt.com), representing a centralised as well as decentralised network in a large country; and the Oncofertility® Consortium (www.oncofertility.northwestern.edu), representing a decentralised, internationally oriented network, primarily serving the transfer of knowledge among its members. KEYwords: fertility preservation, network, FertiPROTEKT, Oncofertility Consortium, ovarian tissue, transplantation RECEIVED: January 12, 2019. ACCEPTED: February 27, 2019. Declaration of conflictinG interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this TYPE: Review article. FUndinG: The author(s) received no financial support for the research, authorship, and/or CORRESPONDING AUTHOR: Michael von Wolff, University Women’s Hospital, Division publication of this article. of Gynaecological Endocrinology and Reproductive Medicine, Inselspital, University Hospital, Friedbühlstrasse 19, 3010 Bern, Switzerland. Email: [email protected] Introduction reimbursed by health insurance companies, which is not yet Since the birth of the first child after ovarian tissue transplan- the case in many countries. tation, fertility protection in women and men has developed Due to these special features of this field, it is inevitable that into a new and clinically relevant independent field.1 This field all the scientific, clinical, and, if necessary, even health care has a number of special features. policy areas involved organise themselves into a network struc- On one hand, the discipline is interdisciplinary, since fertil- ture both as a medical-logistic network and as a professional ity protection requires close coordination between reproductive medical society. medicine specialists, reproductive biologists, and oncologists in The necessary network structures can differ significantly at various disciplines. regional, national, and international level, as the size of the On the other hand, some fertility-preserving measures such regions to be integrated and the local cultural and geographical as transplantation of ovarian tissue, in vitro maturation of conditions, as well as the political conditions are very different. oocytes, maturation of oocytes from ovarian tissue, and the Therefore, in this article, we would like to point the basic cryopreservation of testicular tissue from prepubertal boys are importance and the chances, but also the difficulties, of fertil- still in clinical or even scientific development and therefore ity-protection networks and give practical guidance for the require a high degree of specialisation on the part of the centres development of such network structures. We will not only dis- involved.2-5 cuss network structures theoretically but also present them In addition, this new specialist field represents a particular based on three established different sized networks. These health policy challenge, since fertility-protection measures three networks have different goals and different logistic struc- are to be understood as a treatment for side effects of gonado- tures and thus cover the possible range of possible network toxic treatments and would therefore normally have to be structures. Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). 2 Clinical Medicine Insights: Reproductive Health The selected networks are as follows: 1. The Danish Network (www.rigshospitalet.dk). This network is a centralised network for the practical imple- mentation of specific fertility-preserving techniques such as the cryopreservation and transplantation of ovarian tissue in a small country. 2. The German-Austrian-Swiss network FertiPROTEKT (www.fertiprotekt.com). This network is a centralised as well as decentralised network that controls the imple- mentation of fertility-protective techniques in a large country. 3. The Oncofertility Consortium (www.oncofertility. Figure 1. Networks are frequently set up as multimodular structures. northwestern.edu). This is a decentralised, internation- Small modules (blue) such as infertility centres or hospitals integrate ally oriented network that primarily serves the transfer gynaecologists and oncologists etc. (green). Several of these small modules (blue) are organised as a medium-sized network (orange) such of knowledge among its members. as regional or small national networks. Several of these medium-sized modules (orange) are organised as a large network with a centralised Network Structure body (red) which organises registries, scientific activities, conferences, The structure of a network depends on the following mostly and so on. given and therefore unchangeable conditions and the self- imposed goals: The establishment of a good regional or national network should try to achieve all these goals. Only partial implementa- Given conditions for the establishment of a network tion is possible in some regions and countries. Size of the region to be networked. Structural composition of networks Transport-logistical development of the region. Networks are often modular; the number of modules depends Density and area coverage of reproductive medicine cen- on their size (Figure 1). tres. The conditions and intentions of these modules are differ- Willingness of the centres and doctors to cooperate ent (Table 1). The smallest modular unit is usually a reproduc- tive medicine centre or a clinic that networks regionally or Political and financial support. within the clinic with oncologists. Patients are referred to the Health care policy conditions. reproductive medicine centres directly by the oncologists. The therapy decision is often based on direct bilateral communica- These conditions are largely unchangeable. Accordingly, the tion. The reproductive medicine centre documents the treat- desired network structures must take these conditions into ments so that the data
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